Alzheimer’s

“MOTHER, MAY I”…… AND ALZHEIMER’S

Growing up in San Francisco, the sidewalk was the gathering place and playground for neighborhood kids on a summer evening.  I would like to say a warm summer evening, but in the City that would be unusual.  More often than not great rolls of billowing fog tumbled over the tops of Twin Peaks cooling what was left of a pleasant day, but we didn’t mind.  Living four blocks east from the base of those famous hills, my sister and I tossed on a sweater as our mother had instructed, which was quickly removed and discarded onto a growing pile of outer wear as the games began:  “Kick The Can,” “Hide and Go Seek,” “Tag, You’re It,” naming only a few, and one of my favorites, “Mother May I?”

I have often wondered if its origin came from a frustrated school teacher in an effort to educate the players about the difference between “may” and “can;” permission and ability.   Wherever it began didn’t really matter, “Mother May I?” was fun and if we learned a bit of correct English along the way, it was a bonus.

With the mother in charge of the action. He or she controlled all of the players who were the mother’s children, all standing 20 or 30 feet apart from the mother.   A line, imaginary or real, was established as start and finish with all the children equally spaced on that line.  One by one the mother would call each player by name giving an instruction, and then wait for a response to her command:  “Take one giant step forward,” “Take three steps back,” “Jump forward on one foot four times and turn around.”  Any instruction mother dictated, the player was obliged to do.  Before setting forth, though, the player had to remember to always ask, “Mother May I?”  The mother then responded to the polite request with, “Yes, you may.”  However, the mother could be mean and say, “No, you may not,” and proceed to the next player.  If the player stepped forward without asking permission, she/he had to go back to the beginning and start all over. The winner, of course, was the one who remembered the magic phrase, resulting in reaching the mother and then returning to the finish line before any one of the other players.  The winner became the new mother.  Kids’ games; silly but fun, and pleasant to remember.

Alzheimer’s patients can be very territorial, not only with the house, their room, the car, the newspaper, the mail, or a worthless used napkin.  The list, actually, is endless.   Their life is extremely guarded as is their space.   After several years of living with Ken’s AD, I have found the relationship we share is seldom that of husband and wife.  If for a brief time, my husband is present, he can disappear in mid-sentence, or in mid-action.  Early on Ken was sweeping the kitchen floor — and it was Ken who took out the broom.   I called to him and asked if, after he finished, he would do something else for me.  I don’t even recall what it was, but in an instant he stopped sweeping and armed with broom and dustpan, he stormed over to where I was and growled, “Stop telling me what to do!”  When he becomes threatening, I matched his threat in no uncertain terms, which usually ended in a standoff.    Had I been more astute at that time I could have, possibly, averted his outburst.

Over the years I have learned to be more sensitive to his personality changes and his territorial domain, which is so much a part of being respectful to him as a person.  I have also rekindled the phrase of the old childhood game.  While I don’t say, “Mother, May I,” I do approach him slowly and ask, “May I….?”  If I approach too quickly and reach out to straighten his collar or close a button on his shirt, I may get my hand shoved away, and through gritted teeth he will warn, “Get away from me.”  I have long since stopped being hurt by these actions and remarks because I know this person is not the man I married.  More than likely, he feels like a trapped and frightened animal, fearful of me and my actions, no matter how well-meant.   But I have noticed that if I approach with caution and gently ask permission, using the magic phrase, “May I help you close the blinds?” “May I straighten your collar?” “May I button that one button on your shirt?” or “May I sit next to you on the couch?” and then wait for him to respond.  At times he says, “No,” or “No, thank you,” but other times, if he’s comfortable and not threatened,  he will say, “Yes, you may,” or a simple “yes” giving me permission.  Moving slowly through his strange world of Alzheimer’s keeps us both more content.

Originally posted 2009-08-29 06:40:27.

THE SPARROW

I have found the Internet to be filled with information that goes far and beyond email, but we all know that, so it’s usually the email we go to first.  It’s like long ago when we checked the mailbox for personal mail.  Remember people writing letters?  Now, to receive something with your name handwritten at your front door is unusual — if not downright thrilling.  Most of what the mailman delivers is junk or bills, and email is often like that as well.  No bills, some junk to delete, and at times I’m disappointed to see only forwards.  However, I have come to appreciate even some of those.

There are LOLs (and that’s the new text jargon meaning laugh out loud, and like or not it’s here to stay).  Some I read and delete and others are good enough to forward.  They can be funny, inspirational, nostalgic, political, informative, enlightening, spiritual, sights to see beyond description, travels that can take your breath away, and fabulous photographs from all over the world, under the sea and outer space.  Yes, even those pesky forwards can be worth the time.

A special one, which I recently watched and was drawn to immediately was simply titled “The Sparrow,” and could best be described as a Public Service Announcement (PSA).  It was, however, in a foreign language with English subtitles.  The scene was a garden where two men were sitting on a bench.  The younger man was reading a newspaper, the older man just sitting.  Peace and tranquility prevailed with only the rustle of a newspaper and the sound of a bird.  “What’s that?” asked the old man.  “A sparrow,” replied the young man, probably a son.  Again the old man listened and heard the bird.  “What’s that?” he repeated.  The answer: “A sparrow!”  The young man returned to his paper and one more time the old man asked, “What’s that?”   Rumpling the newspaper in annoyance the younger man said again, his voice resonating with irritation, “A sparrow.  How many times do I have to tell you?”

The old man left the bench, went into the house and returned with a book.  Turning the tattered pages he found a passage handed the book to his son who read it aloud.  It had been the father’s journal from long ago when his own small son sat with him in a garden and the sound of a bird was heard.  The small boy asked his father, “What’s that?” and the father answered, “A sparrow.”  Sparrow: a new word in the boy’s vocabulary which was soon forgotten until he heard the sound again.  “What’s that?” he repeated.  And the father wrote of the experience explaining that the boy asked about the sound over and over.   “Each time,” the father wrote, “I told the boy it was a sparrow and each time I gave him a hug.”  The grown son, no longer holding the newspaper reached over and gave his demented father a hug.

With strong identification, I watched and a tear rolled down my cheek.  But years of living with Alzheimer’s has added a necessary toughness — perhaps a better word is strength — to sentiment, and by putting a hold on sentiment there might be a tendency toward cynicism.  So as a little of the cynic crept into my thoughts I had to conclude that if the old man remembered his journal entry about a sparrow, he should have remembered the word sparrow.  But I also know that cognitive loss is different in every Alzheimer’s patient, and short-term memory is the first to go.  Long-term memory comes and goes and often plays tricks so I put my cynic self to rest and appreciated the message for what it was.  It was loud and clear and didn’t have to be spelled out:  patience.   Alzheimer’s victims deserve patience.

Mike is married to my husband’s sister Loretta (also an AD victim).  He and I have often lamented together about how difficult it is to be continually patient with the forgetfulness and constant repetition.  “That’s the hard part,” he says, “the same questions over and over.”    I couldn’t agree with him more, knowing with certainty that the two of us identify with the irritable son even though we strive our utmost to be patient.

When the father in the PSA wrote of teaching his son about the sparrow, it was easy to be patient for the end result was knowledge for the boy and joy for the father as he watched his son grow to manhood with life stretching before him.  For the grown boy, and for all caregivers of AD patients, there is little joy and even less hope for the future of the ailing victim.  However, there is compensation which comes with a good day, a good evening, a good hour, or even a good moment when the patient is lucid and a spark of memory rushes forth, a moment of tenderness or a familiar smile from the past.  Then the caregiver feels gratitude and patience is rejuvenated — at least for a while.

Originally posted 2009-08-11 06:53:13.

THE PARTNERSHIP

During those first blissful years of early marriage I rarely thought of the state of matrimony as a partnership.  How unromantic was that?  A partnership sounded like some kind of business deal and I thought of “us” as being more than that.   He was the husband and I was the wife.  Husband and wife were the important words as were the titles of Mr. and Mrs. on the outside of most of our addressed mail. 

Before we married I remember how exciting  it was to sit and doodle during spare moments; practicing the best way I was going to write my new name.  Flaring the M for the Mrs. part I then curved the K for Kenneth and looped the R in as many scrolling ways as could be imagined for our shared last name.  I was going to become Mrs. Kenneth Romick as my doodle paper would testify, and it wasn’t going to be some kind of business arrangement.

The “he” part of our marriage was a G.I. student and I was the working wife, but when we were home, it was togetherness.  We moved into our first San Francisco flat where we cleaned and painted the shabby place — together.   We went everywhere together; we played together; we shopped together, we cooked and ate together — then he studied and I cleaned up — not together. 

So, perhaps everything wasn’t meant to be together — but still we weren’t ready for a business partnership. Partnership in marriage, we believed, was like what our parents had: tired and worn, yet pulling together for a common goal; not always at their best with one another, but having it not matter; spending a whole evening together exchanging only a few words and that didn’t matter either.  Yes, they were comfortable partners and Biblically speaking they were  — more or less — equally yoked:  a team.   A team, we noticed, where one member sometimes pulled harder than the other, and then at other times it was the opposite member who pulled the load.

I always believed that our “Honeymoon” lasted longer than most couples we knew.  Even with the birth of our children we had our times of romance.  So, it would be difficult to say when during these past five-plus decades of togetherness we became a partnership, but partnership we became — without sacrificing the “us.”   However, I am certain that the younger generation has long-since viewed our marriage as old and tired and as comfortable as Ken and I once viewed the marriages of our parents.  What I have found most interesting during  these years of coping with Alzheimer’s is how much I miss the partnership. 

I had planned a trip to Washington state  in 2006 to attend the 50th anniversary celebration for long-time friends Julie and Bob.  The couple planned to renew their vows with me as the matron of honor, which I had been, and the best man planned to be in attendance as well.   I explained to Julie that we were planning on coming, but I had to make the decision on a daily basis depending on Ken’s condition.  Yet, I couldn’t wait until the last-minute to make reservations and route our trip. 

One evening I pulled up the Internet punched in motels for our stops and read what was offered.  Several looked good.  I asked Ken to sit with me and help decide where we would stay.  Together we had planned all of our previous vacations.  But with AD he had no idea what I was talking about especially viewing the screen and listening to the information I read to him; it all meant nothing.  I wanted his input — a discussion, to bounce ideas back and forth between one another, to hear what he liked or didn’t like — to help me choose.   He was incapable of helping and in the end, it didn’t matter.  The chosen motel was fine and the trip went well, but I missed my partner — my husband — my team member.

The motel decision wasn’t all that important, but it was an example of what was to come.  The responsibility of “us” is all mine; we are no longer equally yoked, much less a team, and our partnership is in name only.  Our roles have changed.  I am now the caregiver and he is the patient, and I care for him in much the same way as I would care for a child — a very difficult child — who at times is stubborn, explosive and unappreciative.  Although, every so often he is lucid enough to call me sweetheart.  If I’m fast and ask him for a hug, he complies, wrapping his arms around me as in days of old, and for a few moments we are “us.”  We are partners.

Originally posted 2009-08-04 06:20:20.

TO SOOTH THE SAVAGE BEAST

The only way I can find missing “stuff” that Ken hides is to concentrate on one room at a time.  I don’t just search, I clean and sort as I go.  Beginning in one corner, I cover every square inch; moving knickknacks, dusting books, thumbing the pages in search of hidden mail or other pieces of flat stash he might have tucked away.  In our bedroom I always begin in one corner, which seems to be a key area for him to put things in a “safe” place.   Because it is his favorite hiding spot, it is also the cleanest corner in the house.  When I find the thing for which I am searching I usually stop looking — and cleaning.

Presently, I have a long list of missing items, so I will probably cover the entire room including the closet and all of the drawers, and then move on to another room.  Armed with vacuum, old towels, Simple Green, a trash can and a box for donations I begin the task.  Flipping on the TV for company I turn to PBS and find they are doing a funding drive (aren’t they always).  The program is music from mid-century.  Good, I thought — before, after and during the 50s era — that was our kind of music.

As the old familiar tunes played and the cleaning began I found myself drifting back to happier times remembering when people actually went on dates.  Ken was so courteous, never taking it for granted that I would reserve the weekend for him.  Never waiting until the last-minute he would call mid-week to secure an evening.   Of course, we went to movies, enjoyed a snack at a local drive-in afterward, but the popular date was going somewhere to dance.

Dancing under the stars at Larkspur, an open air pavilion in Marin County, was always special.  It could be a little cool, but we were warmed by the romance of it all, or if I felt a chill he would offer his sports coat which I accepted.  Scattered lights twinkled among the surrounding trees and if the fog stayed away the moon shined through adding its own charm.   There was also The Edgewater,  a new dance hall near Playland at San Francisco’s ocean beach just below the Cliff House, but because it was new it was super crowded, so we avoided that one in spite of  missing the band that might be playing.

A really big date was being invited to go dinner dancing at the Claremont Hotel in Berkeley, which we did on occasion.  We danced, ordered dinner, then danced between courses.   The food wasn’t wonderful, but that was all right; music, dancing and a romantic evening out were what was important.  It was all part of what we called courting.

All of the hotels engaged the various Big Bands, but as their popularity began to fade, along with ballroom dancing, the hotels maintained an “in-house” band.  Russ Morgan was the Claremont’s choice for many years.   Ken and I danced mostly to his music and hummed his theme song  “So Tired” which became “our song.”  It was at the Claremont that I first asked myself, “Am I falling in love with this guy?”   I suppose I was — and did.

I had hardly moved on to the next section of the bedroom when Ken found me.   “What are you doing?” he asked.  I’m never sure who he is or what he might say.  Would he feel threatened to find me in “his” room and ask me to leave — to stop touching his stuff?”  I held my breath trying to read his mood.  Accepting my answer as reasonable, he continued.  “Would it be all right if I stayed in here with you,” he asked.  “Of course,” I reassured him.   Looking around for a place to sit, he eyed the bed.  “Is it okay if I sit on the bed?”  My husband was mellow and non-aggressive so I invited him to just make himself comfortable.  Propping up his pillow he settled in.   After a time PBS stopped the program for their long pledge “commercial” before returning to our music of yesteryear.  I continued cleaning and Ken began a conversation.   “Nice music,” he commented.  “Do you remember the songs,” I asked.  “A little,” his answer being more question than fact.   I began to reminisce about our past, cleaning and talking longer than I thought possible, being grateful for this time we were spending together — being almost normal.   Ken listened, adding nothing as he lay there relaxed and enjoying the moments.  I wondered if somewhere in his troubled, clouded mind the sounds from long ago might help him find some peace, at least for a little while.  Wasn’t it Milton who said, “Music hath charms to sooth the savage beast?”  Perhaps he was right.

Originally posted 2009-07-27 01:15:04.

THE HOUSE HOPPER

In many of the old black and white movies the characters did a lot of “night clubbing.”   Apparently, it was the in-thing to do in posh places like New York, Chicago, San Francisco and other sophisticated cities throughout the country.  No one would think of going to a club in blue jeans, much less a tee-shirt.  As a matter of fact, those wearing informal attire would not be admitted.  Patrons were dressed to the hilt; men in tuxedos and women in formal gowns and furs.

Whether it was a gangster movie or one about high society there was at least one night club scene where everyone  knew most everyone else in the establishment.  The male characters (women did not participate in this practice) would leave their own table and meander around the club, stopping at various tables to exchange greetings, business ideas or to schedule a coded mob meeting with the other clientage.  The practice was referred to as table hopping.

With new writers, directors and plots, movies and television moved into a new era with more of a casual flair.  Night clubs and related table hopping went the way of the mobs, taxi dancers, cigarette girls and public dance halls, all fading into oblivion.  But that table-hopping personality trait remained alive and well for more years than I can remember in Ken, my social butterfly husband.

As new home owners moving into one of the cookie-cutter tract houses of the 50s, we found our neighbors to be much the same as we: cookie-cutter people. Most were buying their first home under the G.I. Bill of Rights, they owned one car, had 3.5 children, a dog or cat — perhaps both — struggled to make the mortgage payments, and lived on one income with a very tight budget.   I doubt that any of us were ever a part of, or even considered the social level of night clubbing as seen in those black and white movies.

Once the tract was finished, a whole bunch of people, who were virtual strangers, moved into their homes within the first week.  We greeted one another with a quick “hello” and a casual wave, but strangers quickly became acquaintances as co-op fences sprang up, with costs shared by those owning adjoining properties, and we soon found we had a new group of best friends.

The developer planted one tree on every lot and tossed grass seed on top of the parched earth producing a front lawn.  It was a start and every Saturday, the men pulled out their lawn mowers, cut the grass, pampered the tree and watered the lawn.   Little by little each home began to take on it’s own individuality in spite of the cookie-cutter floor plan, and we found that although we had much in common we were not gingerbread folks straight from the cookie sheet.

We spent evenings on one another’s porches sharing our young lives talking about jobs, careers, our hopes and dreams as our children played on the new grass.  We liked each other and Ken was in his glory with an endless supply of friends to share stories.  Saturdays, with the garage doors up and open, he wandered from house to house to see what new and exciting changes everyone was making, holding boards while John sawed, kibitzing as Fred pondered where to place the gallon cans of young plants, and building a trellis for Herb who couldn’t pound a nail.  Looking outside to see how the mowing was coming along, I would find Ken nowhere in sight.  The mower, however, sat in the middle of the lawn where he had parked it before wandering off to visit.

Coaxing him home to do his own work, I mentioned to him that he couldn’t be accused of table hopping, but he sure was good at house hopping.  Furthermore, I continued, “If we lived in Heaven together, you would no doubt spend eternity cloud hopping.”  I was never certain  if he was deliberately procrastinating  or if his constant visiting was just part of his people-loving personality.  Whatever the reason he soon earned the reputation of the neighborhood house hopper.

Alzheimer’s disease has robbed Ken of most of his abilities and most of his personality.  All of his engineering and building skills have been forgotten and he would be baffled if asked to hold a board while someone else worked the saw.  However,  he can still do putter work — even cutting the grass.  While so much of his physical and mental accomplishments are gone or diminished,  he still enjoys people.

Recently we visited our dear friend, Dorothy, who is confined to bed in a convalescent hospital.  We don’t get there as often as I would like, but when we arrived she was pleased to see us.  Ken doesn’t remember Dorothy at all and when we entered the room with two other patients, he looked around at each person and their visitors.    While I gave Dorothy a hug, he stopped by one of the beds, reached across the patient to shake hands with her visitor and said,  “It’s good to see you again.”  They chatted for a minute and then Ken crossed the room, pulled up a chair and began visiting with Dorothy’s next-bed neighbor.  I whispered to her, asking if she minded chatting with my husband.  “Not at all,” she said, obviously a temporary patient with no visitors, who understood and recognized AD.    Ken made himself comfortable, tossed one leg over the other knee and began, “When I was in the Navy, during World War II……….”     Still a people person, this was table hopping at its best.

Originally posted 2009-07-17 04:57:46.

LITTLE DOG

She was a yappy little thing and had been leaving her calling cards on the lawn at our rental property.  I shooed her away and she ran off with her tail between her legs.  I felt bad because I didn’t want to hurt her feelings, but I didn’t want to clean up after her either.  “Do you know where the little dog lives?” asked one of the neighbors.  I told him I hadn’t seen her before and we both watched as she ran down the street seeming to know where she was going.

Before long we came to realize that she was either badly neglected, lost, abandoned when someone moved or dumped.  Over the next several weeks, I watched as she dodged cars, lapped her water from sprinkler puddles and licked what was left on carelessly tossed food papers.  “If I can catch her, I’ll keep her,” I told the neighbors who had also become sympathetic to the small stray, but no one could catch her.  She knew all the hiding places and all the escape routes in and out of the various yards.  She especially liked the back section of our rentals as most of our tenants were at work and she could spend the day sleeping under a bush with no disturbances — except for me and my helpers — and once we came into view she was gone.

Like Ken, I missed having a pet in the worst way and when old age and a stroke took the last of our beloved dogs, I decided that caring for Ken and our business was all I could manage, but I felt sorry for Little Dog.  So against my better judgement I borrowed an animal carrier from Sabina, my daughter-in-law, and set it near Little Dog’s favorite bush hoping if I put food and water inside she would become accustomed to a “cage” and make trapping her a possibility.  Sabina suggested that I cover the cage with a blanket to make it look like a “den.”  Water in a bowl was the first lure, but I carried a hand full of kibble.  Sure enough, the next day she was there, but viewed me with great suspicion.  I tossed the kibble from a distance, which she accepted.  However, as soon a I stepped forward she was gone.  I examined the cage with its “den” camouflage and decided Little Dog was no dummy.  She had pulled the blanket down and made herself a tidy bed, so I put it in the cage with more kibble and fresh water.   Apparently, she appreciated her new home.  Each day her bed was slept in and the kibble was gone.  After a week or so, if she was there, Little Dog  no longer raced off, often accepting my hand-held treats which she sniffed at until I gently tossed them in her direction.  Closer and closer she came until I could almost touch her, but if I reached out, off she ran.

She was almost like a feral cat and I wondered if there were feral dogs, but that made no sense; dogs liked companionship and people.  So what was her problem?   Perhaps I needed to rethink my intentions.  What if Little Dog was a tramp dog?  Supposing she was happy and wasn’t interested in being retrained?  Maybe she liked her carefree life, especially if she had a benefactor?   What if I trapped her, took her home, worked with her (when?) and Ken forgot, leaving the door open and she ran away?   What then?  Would I hunt her down and try it all again?

Meanwhile our daughter, Julie, called, “Mom, Can you watch our three dogs?  Tim and I would like to get away for a few days.”  It had been a while since her menagerie had come to stay, but I told her it would be all right.  One of their dogs was an escape artist so I knew I would have to be careful with Ken, making sure he never left the front door open; difficult, but manageable.  This would be a test.  If I could manage three dogs and Ken, I could manage Little Dog.

While in the past, Ken whistled at the back door for our dog to come, he wasn’t particularly interested in his three visitors.  Occasionally, he would reach down and pat one of them, but he wondered where they came from and why they were here.   His Alzheimer’s had removed the joyful camaraderie he had once shared with all dogs.  My thoughts these past years that, perhaps, a dog in our house would be good for him were no longer true.  The three canines were just objects to him, and I felt concern when they got excited.  It would be easy for Ken to trip and fall over one of them — if not all of them.   My decision those few years ago had been correct.  We were better off without a dog.  And Little Dog?  I went back to our rentals with kibble and a treat.   Her blanket had not been “nested,” and the kibble was scattered — probably cats.  She was gone.  No one had seen her.   I could have allowed my thoughts to drift to the worst case scenario, but I refused to go there.  Instead, I decided she had been lost, but now she is found.  In my heart, Little Dog was home.

Originally posted 2009-07-11 01:05:40.

SOME THINGS NEVER CHANGE

When my two sisters and I were young marrieds and busy with children or careers we made every effort to stay close, visiting with one another as often as we could.  To make our relationship even more pleasant our husbands were good friends and enjoyed discussing their various fields of endeavor with one another:  Douglas, a jeweler; George, a chemist and Ken an engineer.  Douglas and Ken were WWII veterans having served in the Air Force while Ken was a Navy man.  George, however, had been 4F because of poor eyesight and hearing problems.  Nevertheless, the three delighted in conversation and would sit, bantering with one another about every subject imaginable; war experiences, college life, youth and their troubles, and solving national problems if not the world’s — not to forget sports.

We women described their endless discussions as “Can You Top This,” not to say they out-and-out lied to one another — maybe some fabrication — or better yet, they stretched the truth; each attempting to make his story, no matter what the subject, better than the others.  I had also noticed that our three weren’t much different from most other husbands we knew whose wives complained about their story telling, but right now I’m talking about just three men:  our men.  This is not an attempt to dissect the male psyche, but the habit of “Can You Top This” was something our men indulged in no matter who they were talking with, even us, their wives.  Perhaps, though, not to the degree of repartee savored for one another.

When Ken and I met the thing I liked best about him was his easy, relaxed personality; his broad comfort zone with people from all walks of life.  He could talk with anyone, something that was difficult for me, being rather shy.  I loved his stories, filled with fun and adventure.  He was the life of the party and he was my date.  Ken had the gift of fab and I was happy to be with him.

After we married I noticed his stories grew with the telling.  Happenings about his friends (when Ken wasn’t even there) began to include him as part of the escapade.  I was sure the base story was true, but I started to suspect he enjoyed elaboration and color to make his story just a little bit better, even fudging into some subject matters which were not of his expertise.  Nevertheless, he remained Mr. Charming and definitely Mr. Entertainment.  Our company took pleasure in his chatter and our young children clamored for him to tell his stories again and again, which he did beginning each episode with, “When I was in…….”

As the years passed I probably knew those accounts better than he:  high school sports (which were cut short by his becoming a Merchant Marine seaman at 15), followed by  his stint in the Navy, and then coming home from the war and finishing school.

Always athletic, he skied, had a brief spell with a fledgling (but doomed) semi-pro football team, played a little college and office-league basketball, and swung a baseball bat with the Dad’s Club of our elementary school, and our church athletic group.  If he couldn’t do it well, Ken didn’t do it at all.  For example, his experience with anything movable attached to his feet was a complete disaster.   As a family we tried roller and ice skating at the rinks, but Ken’s weak and wobbly ankles brought those undertakings to a quick end.  Good sport though he was, skating of any kind was not for him.

During all the years of our marriage, he was a sports enthusiast, seldom missing a game on TV, more often than not to my annoyance.  Now, with his Alzheimer’s disease I find myself scanning the screen for any competition which might hold his attention.   Several nights ago, I found a hockey game in full battle.  Personally, I had never paid much attention to Hockey, but as the skaters raced around the rink, I found myself watching.  “Look Ken,” I excitedly said, “They look like a bunch of chickens chasing a bug.”  I wondered in his dementia if he would pick up on what the skaters were doing, but he actually watched and laughed at the wild, fast movements as the players chased the small, black speck on the ice.  We talked a little bit about the game and he actually laughed at my chicken joke.  Then somewhere in his clouded mind the old fabricator struggled free and said, “When I was in high school, I played a little hockey…….not much, our team was really small, but we did all right…..”

I rolled my eyes, and smiled, it was nice to know that somewhere in that tangled mind, Ken, the great spinner of tall tales was still there playing his favorite game, “Can You Top This.”  Some things — hopefully — never change.

Originally posted 2009-07-09 05:56:49.

THE DINNER ROLL RECIPE

“It’s time for us to move back to the Bay Area,” said my father.  “We need to live closer to you — not with you — but near you.”  At 85 he finally admitted to himself that my mother was slipping away and she would need more care than he could provide.  Not yet diagnosed as having Alzheimer’s disease, she was showing all of the signs.  I had noticed her failing as well, but the decision to leave their lovely home located between Sebastopol, California and Bodega Bay which boarders the gentle Pacific had to be theirs.

The little farm as the family lovingly titled my parent’s retirement home had been a gathering place for more than 20 years and tradition at Thanksgiving.   All of that time she and my father bought the bird from a local turkey farm while the rest of us brought the side dishes.  The one thing, however, that no one even ventured to duplicate were the dinner rolls straight from Mama’s oven.

Whether the recipe was her own, her mother’s or one clipped from a magazine we never knew.  What we did know was the roll recipe was tucked away in her black, loose-leaf binder among the other clippings and hand-written cooking treasurers collected through all the years of her married life.  My sisters and I never asked for the recipe because the rolls were Mama’s speciality.  Being a wonderful cook she prepared other specialities as well when there was an occasion or if she felt inspired, but when she was busy, food was plain and simple, “and better for you in the long run,” she assured us.  So it was that we grew up experiencing a few culinary delights as well as steamed potatoes still in their jackets and vegetables cooked in “waterless” cookware.

With their final decision to move absolutely firm, Ken and I looked, and found, an ideal house for them just a few blocks from us.  Four months later I drove the two-hour trip to begin packing with the family coming the following week for the big move.  Mama saved everything.  My job with the help of my niece Denise was not only packing, but also included sorting through some 60-plus years of accumulation.  Dad’s job was to keep those empty boxes coming, and Mama’s job was to see that we were all fed and happy.  After all, she was a wonderful cook.

As we sat down for dinner Denise and I looked at one another with the same thought, “What is thisssss?”  Tasting did not answer the question.  Too much spice, too much salt and too much of whatever else it was that she found in her food supply which made up the mystery dish.  My father, who usually wolfed down his meals in a matter of minutes, ate everything on his plate, but it was an obvious effort, and because he was hungry.   Denise and I dabbled with our food then went back to packing.  Mama, we agreed, had forgotten how to cook.  Following that first night one of us worked with her preparing dinner and I told my dad that he would have to help Mama in the kitchen once they moved into their new home.  Either that or he would have to get used to guess-what dinners.  I had known that Alzheimer’s was stealing away my mother’s thoughts and memories, but I hadn’t realized it was stripping away her skills as well.

When I packed the kitchen supplies, I placed all of her cookbooks in one box, sealed it up realizing that it would be unlikely she would ever use them again.  At the new home I placed the box on a shelf in the garage, planning to glean the best of her recipes and to browse through the black binder at a later date.

The later date didn’t come until after she was gone.  Picking up the dilapidated binder I thought about the aroma of her freshly baked rolls which had beckoned us to the dinner table on so many memorable occasions.  Page by page I searched, but to no avail.  There was no recipe for the rolls I remembered.  Instead of being tucked away in a book it was no doubt tucked away somewhere in the corner of her mind.

Even after  nearly two decades I find that every so often a thought races through my head, “I’ll call Mama and ask her about …..?”  But just as quickly reality follows; Mama isn’t here and a thousand little questions will never have answers.  Nor will I ever make rolls as delicious as the ones she made.

Originally posted 2009-06-04 06:23:00.

THE BEST THING

It was Saturday night and I had hoped to have Ken settled in so I could go to bed early.  I felt unusually tired and he had been beastly all day: very agitated, very angry, very arrogant and argumentative.  He is on medication to cut down on the agitation and it usually works, but not that night.  Suggested dosage is one half pill in the morning and another toward evening.    Nothing seemed to make him happy or subdued, so instead of waiting until evening I gave him the other half in the late afternoon and another half pill (with the doctor’s permission) around 8:00 p.m.  Instead of him becoming calm he became more hyper and more angry.  Even the Tylenol PM at 10:00 o’clock was ineffective as he wandered from room to room ranting and raving and ordering me to leave.

Exasperated beyond description I went into the office and opened the computer thinking I would work for an hour or so.  When he becomes very unreasonable it’s easier to just lock myself in and him out.   I pay no attention to his demands to open the door and eventually he settles down in front of the TV.  Usually, he will sit for a while, get drowsy and I can talk him into getting ready for bed.

After an hour I peeked around the corner and found him ransacking the refrigerator.  “What are you doing?”  I asked.  “I’m hungry,” he replied.   “But we had dinner,” I insisted.  “Maybe you had dinner,” he growled, “but I didn’t.  I’m hungry.”  Perhaps some food would subdue him, I thought, so I made him a peanut butter and jelly sandwich.  He ate half and told me that’s all he wanted.  He went back to sitting in front of the TV.  It was midnight.  “Please go to bed,” I begged.  “No,” he answered.  “I’m going to watch TV all night.” 

Exhausted and sleep deprived I went back into the office.  I couldn’t believe how wired he was — and why?  I returned to the computer.  The letters I typed danced up and down on the monitor and when I tried to proofread I fell asleep at every other line.  How I ached to go to bed and the more sleep deprived I became the more my anger grew.  I raged into the night, cursing that I had ever met him — that we had married — and in my frustration I imagined a simple, uncomplicated life without this deranged man — any man.  Why hadn’t I remained single, opting for a career in New York instead of marriage.  At that moment I saw myself sleeping in the bedroom of a lovely apartment  high above the city.  The room was silent and I was alone — how glorious — then my reverie vanished.  I crossed my arms on the desktop, dropped my head and cried.

It isn’t as though I can’t leave him alone.  At times I do, but only for a while and usually he is sleeping or happily occupied reading junk mail when I run to the bank or do other small errands.  I would be fearful to fall asleep with him in his present frenzied condition.  Even if I pulled the 220 fuse controlling the stove, I would not feel comfortable.   In addition to ransacking the pantry and the refrigerator, he leaves water running and lights on everywhere; and he could hurt himself.   On one of his stubborn nights I found him in the living room on the floor.   Apparently he had fallen getting out of a low chair.   Had I been asleep he would have been there all night. 

Finally, the house seemed quiet as I ventured out to see what he was doing.   Still watching TV, he appeared to be more relaxed.   Softly I asked, “Let’s go to bed.”  He said, “Okay.”  It was 3:00 a.m.

I slept fitfully and awoke at 10:00, staggered into the kitchen/family room and switched on the television.  Through my burning eyes the Palace of Fine Arts in San Francisco appeared on the screen.   I first thought it to be a travelogue, but the scene changed showing two men in a row-boat: one young and the other older.  The younger man spoke briefly; something about not being sure of marriage.  I decided it must be an old movie.  Still recovering from the previous night, I plopped myself  into a chair.  If I watched I didn’t have to do anything else — at least not for a while.  The camera focused to the older man — a Catholic priest — who answered the younger man’s question with reference to marriage, “It’s the best thing I ever did.”  Continuing, he explained that he had been married to a wonderful woman for 26 years.  When she died he entered the priesthood.

I watched this rather silly movie to its end where thousands of young women scurried to the church in response to an ad for marriage to this very wealthy, but reluctant swain.   Following a series of wild chases up and down the hills of San Francisco, he eagerly married his true love with all of the would-be brides as witnesses.   The movie will be easily forgotten, but I’ll remember the most thought-provoking line the writer wrote:  “It’s the best thing I ever did.” 

I remembered the night before; my anger and cursing my own marriage of more than a half century.  It has been a good marriage — not a perfect marriage  — not a perfect man or a perfect woman.  I don’t believe there is that kind of perfection, at least not in this world.   However, I will give my marriage a good solid B — better than average.  Looking back on our youthful beginning I wonder if I thought of “in sickness and in health” as meaning anything more than a cold or the flu.  How naive that would have been, but more likely I don’t believe either of us thought about illness.  After all, isn’t youth invincible?   Healthy young people on the brink of a new life don’t look very far down the road.   And if they did glimpse the ending would it alter their decision to go forward? 

Our life together has brought us our share of adversity and has now thrust upon us this illness of unmeasurable grief and sorrow, but it has also showered us with years of happiness, joy and the blessings of an ever-expanding family.  Our five remarkable children, now showing signs of greying hair and middle-age spread, have bestowed upon us grandchildren and they in turn have given us great-grandchildren, and our posterity will go forth.  Thinking of my imagined single life I had to ask “me” if that’s what I really would have wanted.  Had I chosen not to marry what would that other life be like for me today?  Even without looking down the untaken road I would have to conclude that life without my family, without Ken, would be unbearably lonely and colorless. 

In the bright, warm light of Sunday morning I believe I received something to ponder; perhaps even a Heavenly message through a silly old movie and from an actor portraying a Catholic priest reminding me that, indeed, marriage is the best thing I ever did.

Originally posted 2009-05-15 06:56:12.

HAPPY ANNIVERSARY

It’s January 21, 2009 which is Ken’s and my wedding anniversary.  During the day he took turns being any one of his three personalities — as usual. Some time around 4:00 he seemed to be Ken so I asked if he would like to go for dinner and, perhaps, a movie to celebrate our anniversary.  He looked at me with a questioning smile then asked,  “When did that happen?”  “A long time ago,” I answered, but mention food and he is ready to go.

We went to a small, intimate restaurant owned by our daughter, Julie, which during these economic times is struggling to stay open.  We sat in what has become my favorite corner and ordered dinner — a small dinner.  He becomes agitated when he has to wait very long for anything.  Usually we have been going to some fast food places where he gets instant food.  Even before our meal arrived he became Mr. Hyde and wanted to hurry because he had to get home for his wife who should be home from work.  I rushed as much as I could, considering it was hot soup, telling him we would leave as soon as I finished my dinner.  He began pacing around the restaurant and I could see that he was becoming agitated.  Rather than have him bother the other customers, I decided it best to leave.   Asking for the check our server said it had been taken care of.  Leaving a tip on the table I picked up my coat and purse and peeked into the kitchen saying,  “Thanks for dinner, Julie.”   “Happy anniversary,” she sighed, and we left.

Son-in-law Tim caught us as we were driving out of the parking lot.  “I thought you were going to hang for a little while,” he said.  “No,” I replied.  “Ken has to get home to find his wife.  I came with my husband, but shortly after we arrived the evening turned into a real bummer of a blind date.”   Try a little humor, I thought, to cover the pain.  We said our good evenings and I drove home.  I cried all the way.  Ken didn’t notice.

Foolish woman, I thought to myself.  I knew better.  What did I expect?  Perhaps a miracle — a lucid evening — when he would remember who we were and our life together.  It didn’t happen.  Of course not.  After five years, his Alzheimer’s is well advanced.   On his blog, Dr. David, mentioned “a rotting mind.”   I have called it the same thing and it might as well be as there are hardly any reference points remaining; just a mass of tangles and plaque.   It’s almost as if my husband has died and I’m taking care of  what’s left.   However, I know  I am fortunate that I can still care for him at home.  I just won’t plan — or expect — any romantic evenings with my husband.  But every so often, when the sun is bright,  he will remember just a little and ask, “You know what?”  “What?” I answer.  “I love you.”  It’s not an evening out, nor will it fill the whole day, but for a moment I have my husband back.

Originally posted 2009-01-30 06:14:02.

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